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Do doctors secretly write notes in patients’ files that are shared among other doctors but are not accessible to the patient? For instance, might a doctor write that a patient is difficult or dramatizing their illnesses?

This is such a push-button topic for me. Please bear with me. My daughter Emily had trigeminal and occipital neuralgias, in addition to cluster headaches, following a botched corneal transplant. Trigeminal neuralgia (TN) was known in the early part of the 20th century as the suicide disease. Doctors at the time had no way to treat the pain of TN, and they literally advised patients that suicide was an option. By the latter part of the century, however, patients with comorbid seizure disorders had noticed that their TN pains were alleviated by antiseizure medications, and neurologists capitalized on the new drug therapies for TN. The late Peter Jannetta, M.D., of Pittsburgh Presbyterian Hospital, also developed a surgical intervention, which proved effective in cases of “typical” TN (those affecting the second and/or third branches of the nerve) called microvascular decompression surgery (MVD, for short).Emily did not have typical TN, so she was not a good candidate for MVD. Doctors at Pittsburgh Presbyterian predicted that, in her case, an MVD would have a 70-percent chance of failure. When you’re contemplating brain surgery, a 70% failure rate is not only discouraging; it’s reason to say no to that surgical option. The risk level is too high.Surgeons, neurologists, and researchers have learned a lot about TN in the past 5 years. It is now well-understood that young patients are more likely to develop atypical TN (which will not respond well to MVD procedures), their TN is more likely to advance at a dizzying pace, and it is more likely to become bilateral. TN always begins on one side of the face. In some patients, TN spreads to the opposite side of the face via the sympathetic nervous system. In young patients, TN ingratiates itself quickly onto the second side of the sufferer’s face.How painful is TN? Women compare it to labor pains. Men compare it to kidney stones. Thanks to something called synesthesia, I believe that my daughter’s pain was every bit as difficult as my induced labor, when the epidural did not work, and when my uterus was quite close to rupture.Beginning in April, 2012, my daughter had numerous trips to various ER’s. That month, she had begun treatment with Lyrica but had a massive allergic reaction to it. You would think that that would have been an understandable, defensible reason for visiting an ER. Apparently not. Anaphylactic shock is not enough of a defense when you are thought to be a drug-seeker.In May, her TN became bilateral. Unable to bear the sudden change in her pain, she was taken by her fiancé to the nearest ER. The ER doctor admitted that she did not know about TN and asked Emily for details. Because Emily was a founding member of the Young Patients Committee of the National Facial Pain Association and had access to a data base of over 600 peer-reviewed articles on the subject of facial pain, she was a good source to ask. After taking Emily’s vitals and noting that her blood pressure had risen to levels that could cause a stroke (even in a 24-year-old), the ER doctor was reluctant to release Emily right away. It was only after administering IV opiates and ensuring that Emily’s blood pressure was stable that the ER doctor permitted her to be released. ER records, despite Emily’s status, credentials and obvious emergency state, portrayed her as a drug seeker.Emily’s neurologist is apparently a popular doctor. His caseload became a bit unmanageable, and his staff failed to schedule Emily for regular appointments during my nightmare summer of 2012. Em would have 30 days of managed pain, followed by 2 weeks without medications. TN is a disabling condition. If you do not understand what it means to be disabled by pain, please read A Nation in Pain by Judy Foreman. Chronic pain will cause you to lose as much cortical matter as you would lose over the course of 20 years of aging. Emily’s unmitigated TN pain kept her in the house. She was not even able to walk her dog during that summer. Emily’s nights were long; she spent them awake, due to something pain patients call “painsomnia,” pain so arresting, that there is no way to fall asleep during it, and no way to sleep through it.I would come home from tutoring to find Emily slumped over on her bed, having fallen asleep, during the day, sitting up. The sight always scared me. I invariably screeched, “Emily!” just to have her rouse, for a few seconds, to say, “Oh, mom,” and go back into some sort of twilight world. I doubt it was a restful place.There were two times during the summer of 2012 when I found Emily unconscious and unresponsive. I had no choice but to call 911. Ambulance attendants and ER staff alike treated Emily like a drug addict. The first time around, blood was drawn. Staff administered Narcan, which knocked out all pain relievers in Emily’s bloodstream. Predictably, the onslaught of pain pulled Emily out of unconsciousness, but not in a good way. Just seeing my daughter in that state traumatized me. I grabbed the first nurse I could and informed her that what they had just done would put Emily in enough pain that it could precipitate a seizure. The nurse shrugged and walked away. When I walked back into Emily’s cubicle, her eyes were moving back-and-forth in a pattern known medically as nystagmus. Emily estimated that she had 15 minutes until seizure onset. I went out into the hall again, button-holed a nurse, and said that Emily needed anti-seizure meds. The nurse said, laconically, “I’ll get something,” then proceeded slowly on her way. I called after her, “STAT!”Blood test results came back, showing that there was nothing in Emily’s system that had not been prescribed to her. I was stunned to learn that the tests could not show amounts. Since all substances in her body were prescribed substances, the ER supervising doctor prescribed IV morphine. It rendered Emily immediately unconscious. She had to remain in the hospital overnight.When I returned home that night, I discovered that there was a partly-eaten madeleine cookie on the counter. A bag of frozen fruit and a pint of sorbet had melted on the counter, too. A blender was set up, but was left unused. The evidence left behind told me that Emily had not had a chance to eat breakfast by the time I arrived home in the afternoon. Emily never took any medications on an empty stomach. She had both GERD and Barrett’s esophagus. If she took her prescriptions before she ate, she would vomit well over $100 dollars’ worth of medication. Emily had been rendered unconscious by prescriptions she had not taken that day.On three occasions during the fall, 2012 semester, Emily’s neurologist directed her to go to the ER. On each of those 3 occasions, I accompanied her. Doctors treated her a bit better with a mother present, but only barely.On December 10, 2012, Emily went to closing with her Dad on the farmhouse of her dreams. She and Sean started moving in that afternoon. On his way to an appointment with a massage therapist, Sean tried reaching Emily on his cell phone. Not receiving an answer, Sean became worried. He cancelled his appointment, turned around, and drove back to Orange County, VA. He found Emily unconscious in her pickup. That evening, Emily would again lose consciousness. Sean thought she had been seizing.On the morning of December 11, Emily did not feel well. Neither she nor her fiancé Sean could face the idea of going to an emergency room, where staff were sure to treat Emily like a drug-seeker. Sean took her outside to call her neurologist’s office on her cell. The receptionist who answered Emily’s call couldn’t understand what she was saying. Apparently, the reception was less than ideal. Sean bought Emily a take-out brunch. At Em’s insistence, Sean left to tend to his horse-shoeing appointments. She never wanted her TN to interfere with anyone else’s daily routine. The neurologist did not return Emily’s phone call that day. When Sean returned to the house around 5:00, Emily’s Great Dane Madison was barking up a storm. Sean knew something was terribly wrong. He didn’t yet have a key to the house, so Sean had to break a window pane in the kitchen door to let himself in. Emily had died. Her take-out brunch hadn’t been touched; only a little orange juice was gone from its cup.The only thing that could have saved Emily’s life at the time was a trip to the ER. But ER staff had already mistreated Emily so badly, and roused her fiancé’s distrust sufficiently, that neither of them could entertain that option.The neurologist called Emily’s cell the morning of the 12th. He reached an unsympathetic fiancé, who just said, “You’re too late. Emily already died.” What else was there to say?Emily had attended Northern Virginia Community College since she was 16. Once her TN symptoms started, she had an increasingly difficult time completing coursework. She did manage, however, to receive two certificates. One was in Criminal Forensics, the other in National Security. One week prior to her TN diagnosis, Emily was offered a scholarship and opportunity to finish her education at the FBI Academy, followed by a career at the agency. One week later, the FBI knew about her diagnosis and rescinded its offer. Like so many other chronic pain sufferers, Emily lost her dream career to her diagnosis. Her career, however, had not even begun.On her way to receiving her certificate in Criminal Forensics, Emily wrote a term paper about the operation of Meth labs and the manufacture of methamphetamines. Her community college paper would become required reading for every DEA agent in the country.A year after Emily’s diagnosis, the National Facial Pain Association advertised for young people under the age of 40 to send in texts, indicating their willingness to serve on a newly-minted Young Patients Committee. From over 1,200 text senders, Emily’s was one of the 7 selected to serve. What Emily had texted was that, if she had to suffer all that pain, she wanted others to benefit from it. She was in. The young woman who had turned down a chance to compete on the U.S. equestrian team for the 2012 Olympics was beaming with happiness with the news that she’d been accepted to help found the Young Patients Committee.Neither Emily’s position on the Young Patients Committee nor her background in criminal forensics protected her from the malice and prejudice she encountered in ER’s. They certainly did not protect me.Given Emily’s age at the time of her death, Virginia state law dictated that an autopsy was required. The original death certificate had said that she died of a seizure. It took 12 weeks for the toxicology results to come in. They showed that, as I had suspected, she had not died of a seizure. Her death was caused by acute toxicity of oxycodone, oxymorphone (present only as a metabolite of oxycodone), and codeine. The autopsy report confirmed that Emily’s stomach only contained a couple teaspoons of partially-digested orange juice. There was no sign of capsules or partially-digested pills. Her death was caused, not by medication that Emily had not taken that Tuesday, but by the accumulation of toxic medications that Emily’s liver could not metabolize.The coroner’s report also mentioned that ER reports did not adequately explain Emily’s loss of consciousness which had led to two admissions to emergency rooms during the summer. It would have been advantageous for us to have known that the direct cause of Emily’s trouble was opiate toxicity. It was the reason that Emily had fallen asleep immediately after administration of IV morphine.Emily’s dad and I received help from an attorney who assembled medical records for us. I was surprised to read ER doctors’ notes that did not use direct speech, yet still made it clear that the doctors doubted Emily’s pain. They thought she couldn’t be in pain if she was watching TV. It is common, however, for people with anxiety disorders and extreme pain to want a distraction (like a movie, radio program or podcast) to take their minds off their worries and their pain. Netflix is very popular in the TN community. I do not suffer from TN, but I do have multiple anxiety diagnoses. I well understand the need to get outside of my own head to have any chance at respite; a bit of sleep would be appreciated, too. Apparently, ER doctors are not familiar with this phenomenon. ER notes made it sound like Emily was a drug seeker and that I (who have a well-established intolerance for opiates) was somehow enabling her. I was under the misapprehension that I’d been following the directives of Emily’s neurologist.Bill and I were advised not to sue Emily’s neurologist. The ER doctors had done too thorough a job of portraying her, not as the treatment seeker she was, but as a drug seeker. In civil suits, apparently, there is little opportunity to present rebuttal testimony in defense of the character of the deceased.I have since been adopted as an unofficial, but very supportive, mother of TN sufferers around the globe. I’m afraid that there are those who feel that no justice was afforded to Emily. I suspect that they feel that, in the justice that was denied to Emily, they have been denied justice, too.A Nation in Pain illustrates that medical school curricula allow for roughly four hours’ instruction in identification of pain in patients. Lecture times rarely attain that limited mark. Veterinary candidates, on the other hand, receive 87 hours of training in spotting the signs of pain in their nonverbal patients. Medical schools are effective, however, in training doctoral candidates in spotting drug-seeking behaviors. After reading notes from multiple emergency rooms, I can attest that emergency physicians are, indeed, adept at portraying patients as drug seekers. I also learned, after reading much of A Nation in Pain and a relentless pursuit of on-line medication listings (I always go to the professional pages; the information available for the general public is written at such a low readability level that the articles cannot possibly convey complete information), that doctors must never prescribe codeine in combination with other opiates. Yet, that is precisely what was done in Emily’s case.I cannot say that it’s true that doctors write secret notes that only other doctors can see. Patients have a right to request, and receive a copy of, their ER notes. I would suggest that any and all visitors to emergency rooms request those copies. Technically, ER notes are not secret notes available only to other emergency room personnel. In reality, however, secrecy is maintained, You may wish to dispute the observations, or even the diagnoses, made about you. It will help to have the diagnoses made by your regular physician who sees you following your adventure in the emergency room.

What is a thing that happened to you in the USA that would never happen in Canada?

Several things:When I was 18, I joined my (now ex-)husband in Philadelphia, only to find he was delirious with a fever of 103 degress & spiking. I had almost no money, and Tom had lost his job due to his illnes & had none. Nonetheless, I naively called a service in the yellow pages that sent doctors for home visits, only to find they would not send someone without the money in hand. They did warn me, however, not to take him to the ER beause the weather outside was so cold the shock of taking him into the cold with that fever could kill him—and, without insurance, the ER would turn him away anyway. I went on the streets to beg money for a doctor (and received offers of how to “earn” it in the nearest alley). Finally a Good Samaritan who would not give me his name so I could repay him gave me the money. My plight would NEVER happen in Canada.Years later, my mother was in intensive care. The couple next to me in the waiting room, both professionals with the maximum health insurance possible whose 16 year old son had been in a hideous car accident, were talking about whether, if he survived, to sell the house or take their developmentally disabled other child out of special school to pay for what their health insurance wouldn’t cover. NEVER happen in Canada.Years after that, I had a friend visiting from Ireland whose hemhorrhoids had become intensely painful during the flight over. She had travel insurance, but the hospital refused to take it because they’d had it before ”and there was too much paperwork and they took too long to pay.” NEVER happen in Canada.More than once, even though I had health insurance and an HMO, if I got sick near the end of the month, I put off seeing the doctor because I couldn’t afford the co-pay ‘till I got my next paycheck. NEVER happen in Canada.I’ve now lived worry-free (at least about health care) in Canada for 27 years. I feel safe because—problems like the above would NEVER happen in Canada.NOTE: A number of readers have said, “It’s illegal for an ER to turn away patients.” It wasn’t illegal in 1966, when my now ex-husband fell ill in Philadelphia. Then, they didn’t even have to stabilize you before kicking you out; now they do. The Emergency Medical Treatment and Active Labor Act which requires the ER to stabilize you before kicking you out was not passed until 1986, 20 years after this happened.Furthermore, despite EMTALA, some hospitals still refuse treatment to people who come to the ER or stablize them, then dump them in the streets. To quote a 2009 article in the AMA Journal of Ethics, “Gabino Olvera is a 42-year-old man who is mentally ill, paraplegic, and homeless. He was dropped off by Hollywood Presbyterian Medical Center in a soiled hospital gown with a catheter bag and no wheelchair in a neighborhood populated by many other homeless people [1]. Carol Ann Reyes, an elderly woman suffering from dementia, was dropped off by Kaiser Permanente Bellflower Medical Center in front of Union Rescue Mission, an organization that serves the needy and homeless, wearing just a hospital gown [1]. This practice is known as “patient dumping.”Anderson T. “Lawsuit claims paraplegic dumped medical: hospital van allegedly left ailing patient on skid row.” Los Angeles Daily News. January 18, 2008.Refusal of Emergency Care and Patient DumpingSome have queried doctors’ making house-calls. I found the house-call service in the Yellow Pages in 1966. I don’t know if such services exist in the US today.

What were the worst experiences with medical doctors you ever had?

I had taken my fifteen-year-old daughter to Children’s hospital for a dermatology consult for acne, as it was becoming cystic in places on her face and back. Clinic days can be somewhat of a zoo, with a wide range of ages and diagnoses, and cheerful to screaming children waiting anywhere from 30 minutes to two hours. We had entered the line to be seen and began the registration process. My daughter was becoming visibly more and more self-conscious as the head resident is staring at her face.We were accustomed to the stares and questions from people who were unfamiliar with her birthmark. My daughter was born with a port-wine stain. A genetic vascular defect passed down from her paternal grandfather, which happened to skip a generation. All of our children had a one in four chance of having one. In the case of my daughter, hers was nearly a perfect match to her grandfather's as noted by the first dermatologist who looked at it from the Cleveland Clinic when her grandfather chose to have his removed. Rarely are they that similar.Removal of the port-wine stain is accomplished with laser surgery. The pulsing of the laser cauterizes the vessels underneath the skin. The physicians told us it was like being snapped in the face repeatedly with a rubber band. As her parents, we felt she was too young to sit through the repeated treatments. My father-in-law had said it was more painful afterward during the healing process. Our decision was to wait until our daughter wanted to have her birthmark removed. Until then, we approached inquiries with providing people with information. Our daughter had grown up feeling confident and comfortable with her face as it was.Once we were in the examination room, the entire focus of our appointment immediately shifted due to the curiosity of the head resident. Our small exam room suddenly was full of a revolving door of residents looking at my daughter’s face as a learning experience. Initially, I was cooperating with this, in order to accomplish the goal of treating her acne. My daughter was being treated as a medical oddity, and I was not fully comprehending the implications of what that meant. But as the head resident continued to speak, he began to go further and further from our goal, first by asking for an MRI to assess the depth of her port-wine stain, stating that we were not fully informed as to it’s impact on my daughter. He further stated, after glancing at her education being homeschooled at the time, that she could possibly be retarded and I might not be aware. She might need to be assessed by their neuropsychology department.At that outrageous attempt to utilize scare tactics and intimidation, I asked that he be removed and not return. I repeated the purpose of our appointment and stated that if they were unable to oblige, we would pack-up and leave. The head resident abruptly left, returning with the supervising physician hoping for vindication. The supervising physician began by stating this was a teaching hospital and asked that I exercise patience. I smiled at this comment, knowing I had a response that would appease his need to be clear I understood what he was saying. I explained that I had a colleagueal relationship with the Ombudsman of the University of Oklahoma School of Medicine when I worked at Presbyterian Hospital in Oklahoma City. He would send to me some of his most arrogant and green residents, and I would help them learn to be polite and respect ancillary services such as speech-language therapy. I remarked that it had proven to be quite effective, as we conferred frequently over which ones were the slow ones to understand the lesson.The supervising doctor raised his eyebrows and gave a chuckle, and began to ask what had transpired. I gave him my impressions regarding the ambitions of the head resident and then gestured to my now silently crying daughter. I explained how the head resident suggested that my daughter with the 148 IQ was mentally deficient and how I, with a masters degree in speech-language pathology and 20 years of experience couldn't possibly be wise enough to suspect it or have sought for my child to be evaluated. But even more ironic was the fact she was identified as talented and gifted in second grade in the public school she attended. At no time were we asked if she had attended school.As the supervising doctor nodded and began to ask what of the recommendations I would agree to, the head resident would abruptly leave the exam room to seek more exciting and challenging patients. I blatantly refused the recommendations of the MRI, neuropsychological testing, and follow-up visits for her port-wine stain. He made no attempt to apologize to my daughter or myself once he was corrected regarding her academic level and IQ.Ultimately, we were attended by two of the female residents who began to speak only to my daughter and put her at ease. As they began to speak to her, they also acknowledge the rudeness and arrogance of the head resident. They tried for apologize for his behavior. We would not allow them to do so. We thanked them for their compassion and left with the prescription we had sought. It would be our last clinic visit due to the knowledge the resident rotation changed frequently.It would be a short two and a half years later that my daughter would decide she wanted her birthmark removed. We would be delighted to find one of the two young women residents was specializing in pulse dye laser surgery and chose Dr. Jill Waibel, as the physician to remove the port-wine stain. My daughter endured 200-250 laser flashes each treatment on four different occasions to remove her birthmark. Some along her eyelid, some along her lip and cheek. The laser flashes would be black and then scab over for three to six weeks depending on the depth. I know she was glad she did them and glad she waited.After one of her treatments, despite every precaution, she would suffer a secondary infection that would prolong her healing. A quick call to Dr. Waibel, and she saw my daughter. An antibiotic was ordered and we were told to watch it closely for additional complications. We held our breath that the antibiotics would work and not carry the infection into her bloodstream or surround her eye. Our prayers were answered, and within five days, we could see the new skin peeking out and the infection all but gone.My daughter’s relationship with Dr. Waibel would be the high point of her experience, despite the pain and frustration of waiting for the scabs to heal. We would follow Dr. Waibel’s career after she left that practice and continued her research of the uses for the laser. Most recently we saw Dr. Waibel on ”The Today Show” discussing breakthrough treatments in breaking down scar tissue formed after deep scarring from burns in fires, scars on wounded warriors, and car accidents to improve the scars not only esthetically but also any function that can be increased. She was an amazing physician!

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